Andre Hessels via Crowdrise
January 31, 2016
In January 2013 our lives changed forever. We heard that our children Dylan and Joy have a very rare genetic disease called Fanconi Anemia (FA). Among other things, FA results in bone marrow failure and cancers at a much younger age than the general population. From being an average family, we suddenly transitioned into a family with lots of hospital visits, limited life expectancy for our kids, and uncertainty. How do you react to something like this? We learned early in the process that although we could not choose what life throws at us, we can choose how to respond. And we chose to fight. We also learned that, although we are in a sad situation, we are in a good place. We just moved to New York City and our children are going to Memorial Sloan Kettering Cancer Center, an excellent hospital and one of the few hospitals that knows this rare disease very well. And we found out that we are not alone. We were quickly introduced to the Fanconi Anemia Research Fund (FARF). We found out that FARF is involved in finding a cure, better treatments for FA patients, and family support. FARF is the charity I want to raise funds for by running the Chicago marathon.
- Fanconi Anemia (FA) is essentially a DNA repair disorder disease. By understanding FA, researchers better understand the basic biological process of cancer in general. Your contribution will go to further research into FA and is bringing us one step closer finding a cure, not only for FA but also for cancer.
- The Fanconi Anemia Research Fund (FARF) receives, year-after-year, a four-star rating by the independent Charity Navigator. This means that your dollars will be well spent and are given to a charity that favours and shows transparency and accountability.
- Fanconi Anemia is an orphan disease, a condition that affects fewer than 200,000 people in the U.S. For this reason, almost all funding needs to come from families affected by FA. The last two years I ran the NYC marathon with Fred's Team (another great charity). However, this year FARF co-founder Dave Frohnmayer passed away. Dave was an amazing person, and the world definitely is a better place for FA patients and families now then it was 25 years ago when FARF was established. With the passing of Dave, we, however, also miss important access to financial donors. For this reason, other families like mine need to step up and do more fundraising.
- The secret to living is giving. By donating to FARF you alleviate the suffering that goes along with a genetic rare disease. Unfortunately, we lost too many FA patients, both children and adults to this awful disease. For now, Joy is doing fine but Dylan is already in bone marrow failure and is on a medicine to increase his hemoglobin and platelets. By donating, you provide hope to FA patients and their families so that FA patients can lead fuller, longer, and healthier lives. By donating, you make a difference. Thanks for your contribution.